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Intro
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Trigger Warning
Kate Grandbois: The episode you are about to listen to includes topics that are of a sensitive nature, including death, loss of a child and early pregnancy loss. These topics may be triggering for some. We invite you to explore this episode at a time that is comfortable for you [00:02:00] and to open your heart to the stories that are shared.
Episode
Kate Grandbois: Welcome to SLP Nerdcast. We're so excited to welcome our two expert guests today. Welcome Bibi Morin and Julie Swanson.
Bebe Marin: Hello. Thanks for having us.
Amy Wonkka: Baby and Julie, you are here to discuss how to best address trauma and grief within our own professional practice in order to better support families and staff, as well as to shed some light based on your own personal experiences.
Before we get started, could you please tell us a little bit more about
Bebe Marin: yourselves? Sure. Julie, do you want to start? Sure. Yeah.
Julie Swanson: Hi. Um, I am a mom of three. I have, um, lost, we lost our first IVF miracle baby, um, Gus Swanson to SIDS in 2016. We welcomed two beautiful boys afterwards also from IVF. Um, [00:03:00] one was born in 2017 and the other one was born in 2021.
So I am an active forever grieving parent, um, who, Is just constantly trying to keep the memory of my my angel baby alive within our family and um, I have since become the executive director of a non profit called Emma's Footprints in which we help families who've experienced a pregnancy and infant loss and um, we pay for funerals, um, cremations, burials, uh, counseling sessions, um, support groups, we offer, um, a lot.
Mom one on one mom care. And I mean, so much more I could keep going symposium. We've now created couples retreats. We really, really dive into supporting and walking beside the families as best as we can and providing them resources to continue their growth on the grief journey that they'll forever live.
So
Bebe Marin: that's [00:04:00] about me. And then I have an early intervention speech therapy company. So we're home based three and younger. And my experience had been that throughout my professional career, I have lost little ones unexpectedly. So there was a trauma response. To planning on going, you know, to the zoo and then you get that phone call that your little one is passed away.
Um, and this year I did attend the symposium put together by Emma's Footprints and the Highmark Caring Place, and one of the local hospitals and it was a beautifully. put together very comprehensive training on grief and loss. And it got me thinking as a clinician, I really didn't have counseling.
So I would avoid roads because that's where my little one had passed, or I would avoid situations. And I wasn't really dealing with the loss of [00:05:00] that child. And then thinking about how does that affect me as a clinician? And then how do I go back the next week and see my other 20 families when you know you're suffering the loss of a little one that you really fall in love with.
So at that training, I spoke with Julie and I said I would love to do something for our staff that have lost little ones, but I also felt like most of us have not learned how to go into those homes, and then support those grieving parents. The dads grieve differently than the moms. I did not know that prior to the symposium.
So that's sort of how I became interested in this subject and spent this year interviewing, um, OTs, pt, speech therapists, trying to see what do we need to do as employers? But then also, how do we train staff so that they're confident going into a [00:06:00] home, so they don't say the wrong things and they do the right things.
So that's sort of where we're coming from now as we speak with you too. Thank you
Kate Grandbois: so much for being here. This is a conversation that we're very excited to host and create space for, as I know you will teach us later in this episode. This is something that we are not discussing enough as a profession.
So we're really excited to have you before we get into the conversation. I do need to read our learning objectives and disclosures. So everyone, thank you for your patience. Learning objective number one. List at least two considerations for supporting grieving parents and families in early intervention.
Learning objective number two, list at least two considerations for supporting professionals and staff after the loss of a client. Disclosures, BB's financial disclosures, BB received an honorarium for participating in this course. BB's non financial disclosures, BB has no non [00:07:00] financial relationships to disclose.
Julie's financial disclosures. Julie is the executive director of Emma's Footprints. Julie's non financial disclosures. Julie has no non financial relationships to disclose. Kate, that's me. I am the owner and founder of Grand Voie Therapy and Consulting, LLC, and co founder of SLP Nerdcast. My non financial disclosures.
I'm a member of ASHA SIG 12 and serve on the AAC advisory group for Massachusetts Advocates for Children. I'm also a member of the Berkshire Association for Behavior Analysis and Therapy. Amy, that's me.
Amy Wonkka: Uh, my financial disclosures are that I'm an employee of a public school system and co founder of SLP Nerdcast, and my non financial disclosures are that I'm a member of ASHA Special Interest Group 12, which is AAC, uh, and I participate in the AAC Advisory Group for Massachusetts Advocates for Children.
All right, uh, Bibi and Julie, Why don't you start us off by telling us a little bit about why this topic is [00:08:00] so important? What what
Bebe Marin: interests
Amy Wonkka: you most in talking about this with our listeners
Bebe Marin: today? I can start. I felt that it would have been fantastic to have gone into homes with some background grief awareness, trauma awareness, and not from a pediatric perspective.
We were all taking those wonderful trauma informed kind of classes. This would be more how do I go in as a clinician and into an early intervention home and Accurately support a family member so that I'm saying the right things, but more importantly, doing the right things by a grieving young parent.
I was interested in sharing. That perspective with clinicians so that they can go into a home and feel a little more comfortable, less awkward and talking [00:09:00] about the child that they've lost.
And in Julie's case, I went in with a sibling. So I did not have the pleasure of meeting Gus. But it was helpful to know what's the right way to engage the parent and how do you make it less awkward or difficult during your interactions in that home visit.
Kate Grandbois: And I know something that we mentioned before we even hit the record button today is that many of us don't come to this profession with a lot of counseling experience.
Many of us don't come into the profession with a lot of trauma informed experience or content knowledge. Some of us, if we're lucky, had a one class in graduate school that talked about counseling. Um, and I appreciate, highlight, you know, just. Holding space for a moment to acknowledge that this might be really new [00:10:00] and uncomfortable for many of us going into the home, particularly given that our culture doesn't necessarily openly talk about death and grief and loss, um, in general.
Would you agree with that statement?
Julie Swanson: Absolutely. I would say that I, in my work line, it is literally our job to show up and try and make this a comfortable conversation. How can we provide tools? How can we make it okay? How can we guide and make the conversation flow easier? It doesn't have to be hard, but It's not something that we can avoid anymore.
And I think that's why if we want to show up as a better human being in our own grief and in our own trauma, we have to keep working, right? Like, it's like that with anything in life, really. So I, I can't say that it's It's not something we don't talk about. It's something we're constantly talking about.
It's almost annoying how much we talk [00:11:00] about grief. So, um, I'm excited to dive into this conversation and hope that, um, the listeners walk away feeling a little bit more confident in, in this
Bebe Marin: subject. So something that Julie helped me as a clinician learn, um, as I went in on a weekly basis, um, was Mention the child's name.
Like I did not know Gus, but to be able to say, tell me about him, what was he like, like that was so important to her to have him be validated, but then it also got rid of some of the awkwardness. Um, so that was important for me. And then kind of asking her how she was feeling that specific day, because if it was, everyone was buying backpacks.
It was not going to be a good day if they were posting pictures of birthday parties that he would have been at that was not going to be a good day. Can you elaborate a little bit Julie on what some of the triggers are for [00:12:00] you so that clinicians can be aware of some of what would make a session a little different that day.
Yeah,
Julie Swanson: I think that it's important to know and understand that we don't know what our triggers are until they're in front of us. So we can't predict how grief is going to show up that day. It might not show up at all on a, on a death anniversary, but it might show up a week later or a week prior. Same with birthdays, anniversaries.
So. I specifically remember, um, my little guy was receiving services and I was upset. Number one, that he had to receive services, which I think is probably a common thing as a parent. Um, but let's layer trauma on top of it. And I was more upset because I had lost a child who was so perfect in my eyes.
Right. So I already. Overcame, you know, the infertility world and then I had a healthy baby and then I had the traumatic of [00:13:00] him passing away and burying him and dealing with all of that. And then I welcome another beautiful boy. Oh, wait, he can't talk. Okay, great. Let's let's do this. I don't want to do this.
Right. So that alone was a trigger in itself. Um, agreeing to services and having you show up. Um, I don't, I honestly, I just feel like When you receive services to, it's like, I feel like I'm being robbed of things that should come so easily like talking should just come so easily. Right. And it doesn't. And so, um, that was a trigger in itself.
And then also many things. Um, I don't know, like, Like you mentioned, um, pre kindergarten. I think preschool. I'm sorry. I take that back. Preschool. Gus was supposed to start preschool that year while you were doing services for my little guy, Walter. And so I am seeing all my friends who had healthy, thriving babies around me.
Their [00:14:00] kids are going to preschool and mine is not. So I'm actually not even focused on Walter. And in his growth, I'm more focused on what I don't have anymore. And so I remember that specifically being like a time, something that I've learned through therapy and counseling that holds space for that holds space for the hard moments.
Don't just try and keep going forward. So it was a phone call to BB saying, I can't show up today. For Walter and what he deserves. So I'm going to show up for myself and let's take a pause back and I'll just go play outside for the day instead of trying to do services. Um, I think that it's hard to as parents that are grieving, right?
Loss happens at any point in time. It could be, it doesn't have to be a baby either. It could be any, any type of loss that happens to you.
Bebe Marin: You bring up that really good... Observation, which is so we come in and we're here to help you and I can fix him and I have strategies and [00:15:00] if the mom is grieving over backpacks or meet the teacher day to be able as clinicians to say, how do you feel today? Is everything okay? Is there anything you want me to be aware of?
Um, because it's easy for us to say, I really want to work on our goal. So I need him to imitate gestures with songs or I need him to work on these signs. And that's not going to happen today. So to be able to say what can happen. And yeah, be able to take a look at like what are the dues when you're working with a family who's grieving.
And like we said, it can be five, six years later chronologically. It's still an acute grieving moment if that's what the parent is feeling, but to be there to listen is one of the best things we can do for clinicians in general, but also [00:16:00] then like share the memories. That is something that I learned through Julie as well.
Um, what, it means to be patient. So we're working on a quarterly goal and we're hoping in 12 weeks we can say this is the progress that we've achieved. When the family's grieving, that takes precedent over anything. And so even though we are routines based, we'll change the routine. So I remember one time, Julie, I was talking to her about intervention and we're having a really good session and her eyes kept deviating.
And so we stopped this session and said, what's going on? And then she was able to say, I can't focus today. Can we just get outside? So we went outside and she has this beautiful garden for Gus with decorations and ornaments. So we spent our session helping her go through what she was feeling, letting her [00:17:00] guide.
Us in terms of what are we talking about? What are we doing? And then we just blended intervention and very naturally as she and Walter showed me Gus's garden. Um, yeah, it's important I think for when we receive the evaluation report for the service coordination team to have embedded in there. And this section that talks about the family.
If there is nothing that tells me that this mom lost a child to SIDS. I have no ability to come in and already think I'm going to need to support them and not treat them the way you would a family who has not lost a child who's not experiencing grief the way Julie's family did. So I think that it's important for us as clinicians [00:18:00] to get the right information before we even see a family.
I think you guys have. made such
Amy Wonkka: wonderful points. And I think, you know, as the clinician going in, just that awareness that somebody's experience of that
Bebe Marin: trauma may vary from day
Amy Wonkka: to day and moment to moment, it might come after, you know, sort of the thing that we have on our heads, that might be a challenging time.
Are there, I guess this is more of a question for you, Julie, but are there Other pieces there that you wish that SLPs and other providers better understood in their relationship with parents who are grieving?
Julie Swanson: I think that, um, Bibi kind of touched on it a second ago, but
Bebe Marin: I
Julie Swanson: Still to this day, it's always like awkward paperwork you have to fill out for things.
And then it's like, well, how do I answer that question when I'm trying to actively include him in my life, our lives as a family, but you won't want me to put it [00:19:00] anywhere on a piece of paper. That's no, no finger to point to blame. It's just the way it has been. And I think it's time we, that changes. I think it should say, you know, have you experienced I mean, a pregnancy and infant loss, let's just say it.
Like it's, it's a very common thing. And so check. Yes. Like I w I'm willing to say yes to the things that I've lost, because I think it opens me up as a, as a parent receiving services or not just the communication and the conversational piece of you walking into my home. I think that's key to, um, at least What, like connecting with the family in a different way than just services, because it's, it's hard for us to open our doors and our hearts emotionally, right?
When we've experienced such trauma, we want to hide and maybe not say the things, but the second somebody asks, I guarantee you, um, probably 75 [00:20:00] percent of the moms that we say, tell us about your baby, tell us about your story. Instantly, the connection is there and they're willing to open up. So I think that's really
Bebe Marin: important.
I think that comes into, like, the don'ts. When you are working with a family, as a clinician, you're used to saying, I know how to fix this, or I have some great strategies. When it comes to working with grieving families, um, we want to avoid certain things. And I listened to their Dads in Grief podcast and I thought, holy cow, like these dads.
We're seeing some really, like, amazing, gut wrenching observations. The first one that they talked about that we want to avoid is the use of aphorisms. He's in a better place. No, he's not. His best place was in my arms. What are you talking about? Um, and there was some real anger when I heard these gentlemen [00:21:00] talking about that, or at least she isn't suffering now.
Um, wow, she looks like she's sleeping. No, we don't want to say things like that. And then as clinicians later we don't want to say things like well, I can say a phrase that might make you feel better. We're better off not. Saying aphorisms because a they've heard them already be they trigger anger and rage and a lot of our parents, if not tears.
Um, the other thing, too, is not anticipating that we can tell them how to grieve or when it's been long enough. Julie, can you elaborate a little bit on some of those don'ts? Um, yeah, I think
Julie Swanson: you kind of nailed them and really just saying those I, I, I can't tell you how to grieve. I can tell you that it's not going to, it's not going to, you know, you can't say things that you haven't experienced before.
Right. So, um, this really does suck, [00:22:00] you know, like just period, you know, we don't need to beat around the bush and, um, you know, I'm sorry for your loss. Um, what can I do for you today? Those types of things really make a difference.
Bebe Marin: And I think as clinicians to not trying to get the parents mind off of it. So using distraction, redirection, there are days when that's not the best practice. Um, so there are certain days when I remember with a family that had lost a child, um, getting costumes. For Halloween was a big trigger, um, and not trying to redirect her and see, well, what are we going to do for this little girl?
And what costumes are you wanting her to wear it? If they're grieving over the one that they can't buy a costume for, stay there until they're done talking [00:23:00] about it. And not trying to take their mind off of it. Um, or the other thing that a lot of my clinicians that I interviewed talked about was working with a family who's had a child pass away as a toddler is not all that common.
What is common is parents who either their IVF families, or they will lose. pregnancies, you're working with a toddler, and she'll cancel and say, I have to cancel today. And then you go in and she might say, I had a miscarriage. And then you can't just come back the next week and pretend it never happened or not talk about it.
For some of the younger parents, it matters that clinicians talk about it, bring it up. Um, and the fact that a mom may have lost a child at eight weeks versus the week before it's the child [00:24:00] is due that matters. That baby was there. He was here. He was present. And to say, I canceled because I had a miscarriage and not validate what happened is truly not best practice.
Um, so that's probably something I'd love. clinicians to be aware of. It is awkward. It can bring tears. And if you are a clinician who's had early pregnancy loss, um, I lost my son at 16 weeks and didn't go to counseling, didn't really talk about it until I met Julie. And I thought, holy cow, I never grieved my own son's loss.
And now I know that we really need to help these moms and dads grieve losses of that are early pregnancy, that was still a child, it was still a baby, ask, you know, did they have a name. Was there a burial. [00:25:00] There's a lot of conversation that we can ask clinicians have in our sessions that will help bond with that family better but also may help.
A family who may not have the support of an organization like Emma's Footprints, help them begin to have conversations that are a little difficult or painful. I'm going to add
Julie Swanson: one thing here before we move on. Um, we always say to, to just get curious. So the second you just get curious, the, the questions just come naturally.
Like you said, like, what was his name? You know, what happened? Did you go to the hospital? You know, those type of things. Just get curious in the conversation and you know, takes over.
Kate Grandbois: I so appreciate all of these. Reflections, perspectives, and I'm reflecting on, on [00:26:00] my own experiences and my own as a clinician, as a, as a human, as a mother, and I just want to highlight or point out that to any clinician listening who is feeling uncomfortable or is feeling that this isn't their place, or they don't want to have these difficult, personally difficult conversations with other families, what you're describing is person centered care.
What you're describing is part of our evidence based practice model. What you're describing is ethical. So even though this might not be fluent, even though it might be uncomfortable, making these choices, having these conversations, being curious, showing up for the family, centering the family's grief, supporting the whole family.
These are Fundamental components of our licensure, I also wanted, wanted to ask whether or not you had any suggestions for how a clinician can take care of [00:27:00] themselves.
I can only imagine that for a clinician. To be curious and to ask these difficult questions or to move through this discomfort the clinician needs to be somewhat well centered and also not having a bad day or experiencing grief or loss of their own.
What can you tell us about, um, the clinician's role in this in terms of managing their own mental health?
Bebe Marin: So I have had different types of acute loss. Of toddlers. And it's always the traumatic ones that for me are particularly difficult because you are not anticipating, um, you know, death by car accident or by fire or drownings.
So those are particularly traumatic. So I personally suffered, I feel, um, [00:28:00] in a way that I had never experienced before. So taking care of. My staff as well then, right? Because now I know what that feels like. Um, we have to give ourselves grace. To grieve and say so I know I have 22 clients this week. I am no good to any of you because I can't be cute and perky and present when I'm grieving over the loss of this little, you know, child that I really was in love with.
So I think being able to come to your administrator and say, I really can't do my job for the next few days. So I'm going to cancel all my families and as administrators, I'll Maybe being the one to say, I understand you lost a child. What can I do for you? What do you need? Um, here's money so you can buy them, you know, food.[00:29:00]
Um, I have personally gone and helped them pick out a coffin. I have interpreted for them and had the service coordinator help me make a GoFundMe page. So there's things that we can do. as administrators to support staff. But in terms of the self care, I think the first thing we did was to say, when I interviewed clinicians, what would have been helpful to you?
And the first most common thing they said was, I need to be able to grieve with the team that was involved. So that meant the PT, the nutritionist, the OT, the speech person, the special instruction person, Getting them to what we ended up with was the caring place because it is a nonprofit. We're all coming from multiple agencies so we have different logistics.
But to come together as a group and have a debriefing by a trained professional who is a counselor [00:30:00] specializing in trauma and grief. And then being able to offer after they have a couple of these debriefings individual sessions if that specific clinician. Says I'm not done. I need more help. So that's what we're doing in the county is offering that for clinicians.
Um, but I don't know that when you have lost a client, if you're able to really articulate what you do need. So I think that's where the team that employs those clinicians needs to have something in place, rather than playing catch up, which is what I Work with, with Julie and the caring place was to have something already that as soon as we lose a little one, there is a process.
Um, and that it's not a fly by the seat of your pants kind of a thing when there's a loss. Let's, let's talk about it. No, there's a procedure. We've already interviewed [00:31:00] people. This is what they say they want. And then working with the trained professionals, um, to get them the counseling they need, the debriefing kind of coaching sessions that they need.
Um, and then the other thing that I have found is who is your clinician that has just lost that client? Okay. Is it someone who is more resilient for multiple different reasons? Is it someone whose personality type is more vulnerable and struggling? So clinician one may need different things than clinician two.
So I think as administrators having enough supports so that that individual clinician gets what she needs so that she can go back to work when she's ready and not need to take a different job because the one that we do is just taking pieces of her soul. You know, each time she loses one or each time something happens.[00:32:00]
And in early intervention if you've done this work. It isn't a job as much as a vocation. Which I know for SLPs in general, it is a vocation. But when you're in a home twice a week for a year and a half, you are sort of an extended family member. And then to traumatically lose a child, it's very different than, you know, a different type of loss or a different type of setting because you're intimately bonded with the dad, the mom, their pet, their grandparents.
So, um, supporting those clinicians takes on, I think, a different perspective as administrators of home centered care.
Kate Grandbois: I appreciate that so much. And I am really wondering if you have any recommendations for how a clinician or supervisor or an administration could [00:33:00] initiate some of these structured. Um, I have to assume that many work environments out there don't already have these in place for a variety of reasons. Do you have any resources for where people can go if they're listening to this episode and have either recently experienced a loss or would like to put something in place in.
In the instance where there is a loss, um, what resources are available out there to sort of guide administrations and workplaces to better support their staff and clinicians?
Bebe Marin: Julie, do you have any? Um,
Julie Swanson: for pregnancy and infant loss. We, um, do serve everywhere and anywhere. Um, we send care packages everywhere.
So if you are serving a family that has experienced a pregnancy or infant loss, please reach out to Emma's footprints. You can go find us on Facebook, Instagram, or our website is Emma's footprints. com. Um, our contact is on there. You can text [00:34:00] us, email us. There's many ways to get ahold of us. Um, we can connect you with resources that we know in your area.
If we, if They exist and we are aware of them. We have our database on the back end and then also, um, you know, a care package to a family that has experienced a pregnancy and infant loss can change their day. And so that, that's just a simple, uh, you know, submission that we, that you would send in and we'll get that
Bebe Marin: to them.
And then as an administrator, after I had experienced that incredible symposium training, we created an in our county, um, a team of administrators to then interview staff, look at our own resources in our county and the caring place, the Highmark Caring Place, um, was very helpful to us in terms of walking us through If what they could do for, um, our [00:35:00] clinicians.
Um, and then just if you come up with a group of people who find this topic relevant and important, once you start talking about it, you'll do what's right for your community. So when I first Asha. And I said, I can't find literature on this. I can find literature on NICU nurses in England, but I want to know what about clinicians in the United States, and I really couldn't find a lot of articles at all.
And in speaking with a director there, clinical director at ASHA, she said, would you write an article? Can you share? Your information because this is something we really don't have a lot on. Um, as an organization, you know, Asha doesn't have a lot of information, but county wise find people like you that find this topic important and then decide what are the resources in your own community and have something in [00:36:00] place as early intervention providers or whatever type of.
you know, an organization you're with, have something in place so that step one, clinician calls supervisor. Step two, supervisor reaches out to, you know, the person from the caring place. And then, you know, like there's procedures that we've come up with that make sense to us for our little city. But I think someone needs to put something in place.
We averaged about one loss a year over the last five years, which is why I thought, holy cow, this is a lot of loss for the same clinicians. Um, different, you know, reasons, mostly traumatic, also illness, depending on some of the little ones that come with certain syndromes, but the loss is still genuine for the team.
And if we want to keep our staff employed. And, you know, you spend all this [00:37:00] time meeting these clinicians that are fabulous, and to lose them because we're not supporting their mental health, their emotional health doesn't make sense. Thank you. So that's where I came this year and said, okay, this has got to change.
Kate Grandbois: Those are great suggestions. I wonder if there are any final suggestions that you have for our audience,
Julie?
Bebe Marin: Um,
Julie Swanson: no, I think all I would say is get curious. Hold space for the families. What does that mean? It could mean something different each time. Maybe just ask how they're doing. Change the atmosphere that you're in. Remind them that right now is a bad, bad day, bad minute, but it's not like this forever.
Um, provide resources if you can
Bebe Marin: and give them a hug for sure, for sure. Plenty of those, um, as an [00:38:00] administrator, something we did with our county director who was very passionate about this topic was we hired a professional to focus a training for E I providers for early intervention providers, Pam Pressler.
And then we met her through Emma's footprints. And she custom tailored. A one, a two hour training on how to support parents. Uh, teach us a little bit about grief, the grief process, um, you know, best practices for working with families, um, and so that training work towards our 24 hours of continuing ed was wonderful.
And so our next topic is going to be a little bit more on the self care for clinicians. Um, that have experienced grief as well. And if you are the clinician and not the administrator, get talking, get your county to be aware of these subjects, you know, we need help as clinicians families need [00:39:00] informed clinicians.
Start talking and make some changes within your work environment and in your county because it will affect everyone and it does make your county a better, more supportive place to be.
Thank
Kate Grandbois: you so much. Thank you so, so much for sharing everything with us today, your words of advice, your stories. We're very grateful for your time. All of the references that you mentioned will be listed in the show notes for anyone who is listening, um, and including the contact information for Emma's footprints.
Thank you again so much for being here and. Just thank
Julie Swanson: you.
Bebe Marin: We really appreciate that you find this, um, subject as important as we do. So thank you for putting it out there for all the other EI clinicians.[00:40:00]
Kate Grandbois: Thank you so much for joining us in today's episode, as always, you can use this episode for ASHA CEUs. You can also potentially use this episode for other credits, depending on the regulations of your governing body. To determine if this episode will count towards professional development in your area of study.
Please check in with your governing bodies or you can go to our website, www.slpnerdcast.com all of the references and information listed throughout the course of the episode will be listed in the show notes. And as always, if you have any questions, please email us at info@slpnerdcast.com
thank you so much for joining us and we hope to welcome you back here again soon.
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